I am simply humbled by the love and compassion that young Giovanni Cipriano’s family has for our children with life threatening food allergies. They want don’t want any other family to ever experience what they are facing daily: unimaginable heartbreak. Only one month after Giovanni died from eating trial mix containing peanut, they are speaking out to save other children with life threatening food allergies. Grab a tissue, it is hard to witness a mother and father’s raw pain. They are incredibly strong to go on camera to share that they did not fully understand the magnitude of their child’s allergy and they had taken it “lightly”. Giovanni’s father explained, “Don’t take it lightly because we did take it lightly. We definitely never thought, because we never had a serious reaction. And within it felt like a half a minute, our life was turned upside down.”
EpiPen® was not used. Giovanni’s family had an EpiPen® and did not use it. Clearly, they did everything they thought needed to do. Tragically, I believe, our break down in education–starting with health care and then to our society impacted Giovanni’s short life. This is the part that is really getting under my skin right now. Why is it that families do not understand the severity of their child’s disease or when to use epinephrine? I’ve heard story after story from parents, who did not receive a strong message from their physician and don’t understand. I love my pediatrician to pieces. After my son’s first suspected reaction, he immediately instructed me to NOT come into his office, but to go directly to an allergist–a specialist. I know there are some fabulous pediatricians who understand life threatening food allergies, but how would a parent know this? Specialists are needed, but even with a specialist, the message needs to be strong and clear.
Do you know when it is time to use an EpiPen®or Auvi-Q®?
Society’s role? I also am feeling weary of how society fights back at the thought of life threatening food allergies. This is obscene to me. Never, in a million years would I ever question anyone’s health condition, so why do others question my child’s disease? Is it since the disease is invisible and my children look good? Or that as long as food allergies are managed all is well, then it doesn’t “really” exist? By society not supporting this disease, families are actually experiencing peer pressure to NOT appropriately take care of their child. Think of how many times we’ve heard “just a little” won’t hurt as someone is trying to push your child into eating something–similar to a drug pusher. I know this sounds cranky, but I’m really getting frustrated with death after death. Just heard of another today, but with not many details being released, yet.
Sending much love and prayers to Giorgina and John Cipriano
Thank you Giorgina and John for being so selfless and taking a stand to speak out to other families who don’t know enough about life threatening food allergies. You inspire me to do a better job as a parent and as a food allergy advocate.
A fund has been set up for the Cirpriano family to help pay medical and funeral costs at Help Giovanni Cipriano via GoFundMe. The family hopes to establish a foundation called Gio’s Smile to help raise funds for food allergy awareness.
One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
Wow. Such brave parents. I am so thankful they are speaking out and they will save lives with their words! You are absolutely right society plays a role, there is a huge hurdle, the hurdle of believing, and unfortunately many parents have also not yet cleared that hurdle.
Anne,
I am just in awe of Giovanni’s parents. They could frozen right now, and yet they go before a camera to try to keep the children of strangers safe. Wow. That says a lot about them. I’m just getting more and more frustrated with the peer pressure out there to “just go along and don’t create a fuss”. The end results of just going along have been horrific and it’s time for a societal change?! Someday soon I truly believe since people like Giovanni’s parents are making change.
Thank you for voicing the concerns of food allergy advocates so well, Caroline! I was just having this discussion today. I am really upset about the fact that so many people do not know to have their epi on hand at all times and to USE IT. It illustrates a real break-down in education.
Gina,
It is heart breaking when I see that or hear that too! Epinephrine is no longer for “those kids with severe allergies. It’s for all allergies. We just need to keep on pushing!
Thank you! Thank you for sharing your story and spreading awareness. This is my biggest fear! My daughter has several food allergies and I have seen her experience anaphylaxis with the ingestion of a peanut butter cracker. I agree that there is a “peer pressure” about eating foods, people look at us like we are crazy when it comes to our daughter’s food. The treat us like we are making it up. Please, continue to tell your story so no one has to experience this profound loss. God bless you and your family. God bless Giovanni!
Heather,
Thanks for your comments. I do pray for Giovanni’s family and their strength to keep sharing their stories. I also hope that day when those crazy looks stop coming our way. The more awareness we create, the more our society will understand that this invisible disease is real and small changes, like not sharing allergens while food allergic folk are present can save lives. It’s that simple. Thank you for your awareness and strength!
As we were discovering and learning to cope with all of my son’s food allergies in his first two years of life, we ended up at the ER 7 times. I found that even in the ER they didn’t really take his food allergies very seriously. One time we came in, with his face swollen and red, him itching like crazy, and he threw up all over the floor in front of the ER check in desk, and they still did not act with any great urgency until my husband started screaming that he was having an allergic reaction and we needed someone to help us right now. They actually got on the phone to call someone to come clean the floor before they started to call someone to help us. And this wasn’t some strip mall clinic, it was Texas Children’s Hospital in Houston, TX.
I do find it hard myself, even though we’ve had bad reactions in the past, to remember to always be vigilant. When we’ve gone a long while without any reactions, I start to think “maybe he’s outgrown some of his allergies. Maybe we don’t have to be as careful.” and then, of course, some reaction happens to bring me back to reality. And don’t get me wrong, when I say ‘maybe we don’t have to be as careful’, I don’t mean trying to feed him foods he’s allergic to, but I mean relaxing on all the handwiping we do, and having kids who play with him wash hands, and that kind of thing. It’s that stuff that makes me feel like other people are thinking I’m a paranoid and overprotective mom.
My Allergist once said to me, “If you feel crazy, then you are doing your job”. I was whinning to him about feeling like the crazy lady. We need to be over protective until the word anaphylaxis is a household word.
As an EMT, a medical dispatcher, a mother, and one with a peanut allergy never be afraid to stand up for your child to anyone. It may be their school or even their doctor.Have that EPI pen and know how to use it. Teach your child, educate your child’s teachers, the more that know the more understanding there will be.
Excerpt from Katie Couric Article:
“Giovanni Cipriano was an ordinary 14-year-old high school freshman who had a passion for baseball and had just made the honor roll. One quiet night, as he snacked on trail mix and watched a movie with his mother, his throat began to incessantly itch. Unbeknown to Giovanni and his mother, there were peanuts in the mix, which he had been allergic to since he was 18 months old. His mother gave him a double dose of Benadryl and frantically rushed to the hospital.”
I am really sorry for this boys loss. No parent should have to loose a child.
What I am even more sorry for is the fact that even though the family knew of the peanut allergy, there was still a bag of trail mix to be snacked on.
ANY trail mix I have ever eaten in my entire life has contained peanuts and yet, a person with a peanut allergy ate trail mix.
I really am not trying to be insensitive, but I just am trying to put my head around this. Can someone explain why this poor child was eating trail mix when everyone knew he was allergic to peanuts (since he was 18 months old)?
There are a few nutfree allergens on the market, but we really don’t know what the circumstance was. It is my family policy to keep our home as a safe allergen free haven. I know many families who do not have the same plan.
The parents knew their son had a peanut allergy, they buy tail mix with peanuts in it and don’t have an Epi pen that they could redily locate? OMG!
We will never know but I must share that I have heard an allergist once suggest that families do not remove allergens from their home.
I heard Brian Hom, who lost his son BJ to aN allergic reaction, speak a few weeks ago. His doctor told him that his son did not need to carry an Epi. That proved to be a fatal error. Horribly tragic